￼￼(1992. Two months old between castings)
Clubfoot is a deformity which causes a newborn's feet to point down and inward. Tendons on the inside and rear of foot are too short and pull the foot into a "C" shape.
￼￼(1992. My brothers Joseph and Josh when imwas a month or so old)
As an adult, I am pretty use to having clubfoot. I take care when I buy shoes. I used to think I'd have to buy two different sizes. Obviously not, but still. I even used to wear boots, flats, or sneakers to dances in high school. When I get tired, and by that I mean when my ankles get sore, I limp. Two summers ago, I started to experience severe pain in my left ankle and the pain has progressively gotten worse. And it's odd for me to think about it, but my family has never known me without pain. My parents just knew at the end of everyday, I'd be limping around and it was just a normal thing. But l'm sick and tired of that being the norm.
￼(2017. Current x-rays.)
My pain is heavily interfering with my quality of life and my ability to be the best employee, daughter, aunt, and friend I can be. I want to be able to walk through the mall and not have to take breaks. Or go play disc golf in the woods and not be scared of stepping the wrong way and not being to walk for a few days. I want to run in the backyard after kids one day and then later carry them up the stairs after they fall asleep on the couch beside me. I can't even do the things I'd would love to do with my niece or nephew. To remedy the pain I have tried quite a bit of 'solutions'. I even Black Friday shopped while on crutches one year with my mom-- BECAUSE NOTHING STOPS US FROM DEALS!! But, I digress. Nothing has been enough to help me, let alone get active. I want a better chance at doing all these things and more.
￼￼(2009. Leaving the Sadie Hawkins dance)
Funny thing is that the place that brought me this little beacon of light....happened to give me the worst anxiety. I joined a clubfoot community on Facebook and through them is where I first heard about a medical device called the ExoSym. But when I first got in there, I had one of the worst panic attacks of my life after reading through the stories of others. Because I had never had another clubfoot case so tangible and so accessible to speak to. To read the different stages of life and different plans of action-- it was an overload. But then after a month of limited reading on them (to keep myself from freaking out again... I finally did it. I reached out and asked for help. And they gave me some amazing encouragement and advice. So here we are.
￼(2017. Attempted stand up paddle boarding)
The ExoSym/IDEO acts basically like a highly sophisticated, light-weight, shock absorber for the foot. So I can go back to everything that makes life worth living even continue working on my feet. Something that many take for granted just because they just don't know any different. But with this, there will be no stopping me. Its basically a new lease on life; there are no words to explain how much of an impact that these braces will have on my life.
A man named Ryan Blanck (pictured above) designed the Intrepid Dynamic Exoskeletal Orthosis (IDEO) at the Center for the Intrepid, Brooke Army Medical Center in 2009. His goals were to reduce pain and restore mobility to active-duty and retired service members with limb salvage conditions as a way to avoid amputation. Think: the last stand. It uses a strut system to store up the energy and release it during walking while propelling you forward. It will also keep my feet in alignment, give me an arch, and control my ever present nerve pain. Two birds with one device, both my nerve and bone pain will be controlled.
￼(An example of an exosym)
The cost of a single device is $9,000 and I need two! Included in this cost will be: physical evaluation, casting, fabrication and fitting of the test device, followed by the actual carbon fiber brace. Also included are the associated functional costs for the training of use and any adjustments. Half the dues have to be paid during the training, the rest can be paid later on ( I believe within six months ). In the next few months, I hope to travel to Gig Harbor, Washington-- right outside of Seattle. The time there will be spent in close proximity to the clinic to be on-site for the whole process while I work with this amazing team and the actual designer himself, Ryan Blanck.
I have given up enough time to these feet. There comes a time when you stop just settling and you start fighting back. This is that time for me. This is my chance to take back my life and REALLY live it to the fullest. So if there is anything you can contribute, you will become a building block towards a brighter, more active future for me, my family, and friends.
Join the fight, change a life.
- Glynnis Janzen
- Lindsay David
- Sonya Bard
- Kelly Thorvalson
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